Hi everyone, I’ve stayed away for a while as I was overwhelmed with information. I’m waiting on radiotherapy for my dcis. I’ve had surgery and just got my letter from the oncologist. Seeing high grade dcis with necrosis is scaring me. My surgeon was happy that he got clear margins and surgery was a success. My oncologist has told me even without radiotherapy my chance of recurrence over 10 years is 15%. 5-6% with radiotherapy. I’m becoming very focussed however on the words high grade and necrosis. The area removed was large 20mm but I think 55mm was taken to include a micro calcification that was picked up on the mammogram after I’d had my sample biopsy. They attempted to do another biopsy but it was too difficult to pick up so it was just removed during surgery.
My oncologist last week didn’t seem at all concerned and even stressed I didn’t have to have radiotherapy if I didn’t want to, her letter however is stressing me out and I’m not sure why.
I can answer 1 bit, but not the other. Although your DCIS was 'high grade, that just puts it at a higher risk of it possibly turning into IDC in the future, but you weren’t there yet, so it hadn’t formed the ability to spread. If you graded it on the IDC scale, you would be a 0. My IDC was surrounded by some medium and high grade DCIS - often found together as cancer can develop from DCIS.
The necrosis bit, not sure, although the literal meaning of necrosis is dead tissue.
Overall, if you have good margins, then it should all be gone.
The radio may help to prevent other breast tissue from developing DCIS in future.
Thank you for your reply, it helps a lot. I’m not being at all rational right now.
Hi @charlie55, how are you doing? I’m new here so going through all the messages and came across yours. I am curious to know what decision you made in the end?
Hi, sorry I’m not on here much so just seeing your message now. I spoke with the breast care nurses and felt reassured that everything was normal. I’ve had radiotherapy and it went well. I’m now in limbo a little. I feel a bit lost. Treatment is over and I should feel happy but I feel a bit lost. My life as I knew it is over and I’m not sure how to navigate my new life.
I need counselling but tbh I’ve not found the right fit yet.
This sounds very doom and gloom, I do feel ok a lot of the time but some days are tough.
How are you? Are you in the midst of treatment or waiting?
Hi Charlie. I think we can all relate to how you are feeling. Through diagnosis and treatment it’s head down, one foot in front of the other and let’s get this sorted. You concentrate on just getting it all over and done with and getting back to “normal “ back to how you were. But you aren’t that person any more. Cancer will have changed you mentally and physically and it’s a new normal now. It will take a while for you to get to know the “new me” but you will get there and I found I quite like the new me. Give yourself a break, take the time as they say to smell the roses, just sit quietly and breath.
Remember there are so many here for you and saying hello to the new Charlie and giving her a hug. xxxxx
Thank you. I feel very let down by a lot of people through all of this so it’s nice to know I have friends in strangers.